The Story So Far part 1

Well, here it is, the only marginally abridged version of The Leukemia Story. Now, since I’ve written it here, I’ll only have to repeat it for the rest of my life. Here it is!

I was diagnosed with CML somewhere around mid to late April, 2009. I first noticed something was awry when it occurred to me that I felt like crap. Using this clue as a springboard, I soon discovered that my stomach was swollen and tight, as if I were clenching all my muscles. From these pieces of evidence I quickly concluded that I was weird, and attempted to forget about it for almost six months. Finally, my acupuncturist insisted that I go to see a doctor.

So I went to my family doctor, Dr. Jodi Katz. Only Dr. Katz had moved to another medical facility, so I was instead transferred to Dr. Schwartz (female). She was a middle-aged woman with a rotund figure and short cropped brown and gray hair, and a Israeli accent. She felt my stomach and decided that it was weird, so she sent me to get an ultra sound, and also to get a blood test. So I went and did both, and the ultra sound confirmed right away that my spleen was several times larger than it should be. In fact, it took up almost my entire left side, from ribs to navel.

About a week later, I was staying at a friend’s apartment in Brooklyn (they were away at the time) when I get a call from the blood technician, who immediately asked how I felt. Now, when health care professionals start caring about the state of your health, you know some thing’s up. But the tech wouldn’t tell me anything over the phone, just insisted that I stop whatever I was doing and go to the clinic. It was a Sunday as I recall, and I did have something planned, but decided to haul my ass to the clinic instead. So I hopped a subway and then a bus home to NJ, and from there my mom and longtime friend Xaq and his dad Bernie accompanied me to the clinic.

Since it was the weekend, Dr. Schwartz was not in, so I was assigned a random weekend doctor, who told me and everyone else that my white blood cell count was 256 thousand parts per million, while the high normal is 10 thousand parts per million. High white counts are indicative of cancer. That was the shock time, knowing I probably had cancer. Forget what type, just the word alone was numbing. My mom and I had a good cry in the parting lot, and then Bernie cracked a joke and we felt better.

Fast forward almost a month and a butt load of tests later, and Holy Name Hospital confirmed I had CML, and my white count had jumped to 384 thousand parts per million. Holy Name had no Leukemia specialists, and instead assigned me an Oncologist, Dr. Pieczara (female). They started the treatment on Gleevec while we looked for a suitable specialist in the area.

Gleevec is the wonder drug of CML, and is the fastest approved drug in FDA history. Without getting too much into the nitty-gritty, it essentially targets only the mutated cancer white blood cells and eliminates them, leaving the rest of the healthy cells alone. Because of this targeted approach, Gleevec’s side effects are mild and it’s toxicity footprint is significantly lower than “traditional” chemo. It’s also way cooler than a bone marrow transplant, which requires a full year of inactivity and being brought to the brink of death via literally pounds of chemo, plus auto immune disorders for the rest of your life! Didn’t sound fun, and what doesn’t sound fun, should generally be avoided.

To start on Gleevec I had to be hospitalized so they could hook me up to a IV which would ensure that my kidney’s flushed the massive amounts of cancerous white blood cells the Gleevec would kill. I had my own room, and the food was catered by the Marriott hotel, but other than that the experience rather sucked.

They pumped me with 150ml of water every 6 hours, which meant I had to whiz every thirty minutes. And this was no wait around ’till your ready whiz, either. This was, “Unleash the waterfall now, or your bladder will explode!” whiz. I also had to wear a silly blue gown, and nurses would wake me up regularly throughout the night to check my temperature. Unfortunately my temperature was always high (a common and mostly harmless Gleevec side effect), but hospital protocol insisted that they immediately take blood cultures (as 4 am) to see if I had an infection. After three days in a row of this with infection results coming up negative, and an infection specialist personally giving me a clean bill of health, the nurses still blindly went along with the blood culture policy, until I figured out I could refuse “treatment”. Even then, they snuck in the blood cultures while my normal blood was being drawn.

The good part was, that everyone came to visit me in the hospital. My parents were almost always there, legions of my extended family showed up, and lots of friends piled in as well. This was all very wonderful and much appreciated, and made the time go much more pleasantly than just sitting around and waiting to pee. But finally, after five days and a lot of movies and books, I was released. My white cells were down to 125 thousand parts per million. After that moderately harrowing experience, I was ready for some sun, so I immediately hit the beach! But that’s a story for part 2!